Chaotic & Comfortable

Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.

Saturday, February 22, 2014

Breaking News.....

YOU can help bring THIS BEAUTIFUL girl home and have a chance to win some pretty incredible gift "Kards" in the process.

Here's how it works:

*1 entry for each $5 donated.

HOW TO DONATE: You can donate via her youcaring link here (button also on the right) or via Kamila's Lifesong account: Lifesong for Orphans PO Box 40/202 N. Ford St Gridley, IL 61744. Include in the memo: FENSKE #2453; or online at Lifesong for Orphans.

*1 additional entry for each share on Facebook, Twitter or Blogspot

*Comment here after to let me know you've entered/shared so I can credit you the appropriate number of entries.

Monday, February 17, 2014

I'll spare you the long, sad story since most of you reading probably already know it, but if you don't and you want a refresher, you can go back here and here. I haven't had much to say the past couple of years because there simply hasn't been much. We've been promised more times than I can count and we've stood ready every second of every day. I go to bed at night thinking of her and wake up every morning thinking of her because that's what do when you are parents of a child. Despite what some people believe, you CAN actually love a child who is not in your home, not in your arms. It's a different kind of love - one that still has to grow in the traditional sense, but it's still very real. My heart has been broken for this little girl for six years and a piece of my heart has been on the other side of the world since the day we said "yes."

Lest you think I have been the one suffering here, let me assure you, what I have been through is nothing compared to what she has been through. She lives in a state of constant physical and emotional distress. She may have a roof and some clothing (although none of it is hers), she may even have an occasional toy to play with. She receives food and water even though her diet is inadequate to ensure proper growth and nutrition. She doesn't go to school or experience the ins and outs of daily family life. She doesn't HAVE a family to call her own. She doesn't have someone to tuck her in at night, say prayers, hold her when she's sick, respond to her cries, share successes and dreams with, teach her to speak, or celebrate holidays with.

It has been almost two years since we've seen her - an eternity. We told her we were coming back - we PROMISED. I wonder sometimes if she thinks we lied to her or abandoned her and if she hates us for that. I pray that she will eventually forgive us and that in time can learn to love us. I wonder how deep her emotional scars are and if her heart can be softened again. I pray every day that we will have the chance to try.

The Kyrgyz government is once again in the process of reopening adoptions. We are beyond desperate to free her this time. She needs us and we need her. Over the coming weeks and months we will once again redo all of our paperwork, sign on with yet another agency and put our trust in the hands of people who will hopefully guide us to bringing our sweet little girl to redemption. We pray you will follow our journey and support us along the way.

Friday, February 7, 2014

Friends, I owe you an update - yes I do. Stick with me and I promise you lots of photos! It's been a crazy few months as always, but we have survived. Praying winter ends soon, though. I am craving some sunshine and warmer weather - as are the children!!

In my last post, I told you about Ulysses and I'm happy to report that during the Angel Tree period, he had over $1000 added to his Reece's Rainbow fund! Now, we just have to find his family!! Thank you to all who supported him!

December brought winter and Christmas! This was our very first Holiday Season completely and totally outside of the hospital. Seriously, folks, this was foreign territory for us. I was on pins and needles waiting for the other shoe to drop. We were knee-deep in a medication wean, all the kids were healthy, I had a hard time believing everything was just going to be....NORMAL. But, it was and it was great!

January brought frigid temperatures and bit more insanity spirit to the house. While it was good for the kids to return to school and for everyone to try and get back into their routines, not having an outlet for our pent-up energy proved challenging.
Esen has been struggling with school...A LOT. We're amping up his PT/OT sessions to weekly and extending them to 3 hours to make them more intensive. He's also undergoing some more evaluations to see if additional services might be beneficial. Academically, he rocks, but socially/emotionally, he has a hard time holding it together.

Miss Noodle gave us quite a
scare toward the end of January when she took her very first helicopter ride. On a Sunday morning, she started seizing and it went on for quite a long time. Her rescue medication did not stop it. We called 911 immediately since we are in a remote area and response times are long. We have first responders who are very kind and sweet, but unfortunately are not super helpful in a real emergency. They are very limited to what they can do. In this situation, they can put an oxygen mask on her, gather all of the info for the Paramedics and basically stay out of my way so I can treat her and prepare her for transport. By the time Paramedics arrived 30 minutes after our 911 call, I had accessed her metaport for venous access, spoken to her neurosurgeon and neurologist and had everything ready to go. The decision was made to transport her to the local hospital and immediately transfer her via MedFlight to our Children's Hospital in Madison. The entire process took 2 1/2 hours!This, my friends, is why I am so very old. We have been desperate for years to move for this very reason. The distance and inaccessibility is downright dangerous for her. Had she arrested (which she has done in the past during these events) or had she been having a massive shunt malfunction, that amount time passing could've caused severe damage or could've cost her her life. Happily, she is home and has recovered. While she is struggling some to adjust to new medications, she has not suffered any permanent effects from this seizure. We'll be scheduling surgery in the next month or so to add an additional valve to her distal shunt.

Other than those things, there are a lot of inside activities happening - donut making, football playing, movie watching, and general silliness going on.

I promise another update soon - next time on our sweet Kamila and the hopeful progress that we might soon be making in bringing her home!!

Saturday, November 9, 2013

There's a newish button the sidebar of my blog. I decided this year to become an Angel Tree Warrior for a Reece's Rainbow kiddo after I stumbled across Ulysses. Read his profile and I think it'll be apparent why I fell so hard for him. He reminds me of someone pretty special in my life. I just know he would be a very loved and welcome addition to a family. Unfortunately so many of the families like ours who are willing and able to adopt children like Ulysses are not in a financial position to do so. That's where we as a community can come together to break down those barriers and pave the road to freedom for a child. This little boy can thrive, he CAN and he WOULD. I have living proof right in front of me. Please consider a donation of any amount to Ulysses' Angel Tree fund. It is 100% secure, tax deductible, and 100% goes to him - just click the Angel Tree button to the right. Help us reach our goal of adding $1000 to his fund by Christmas.

Saturday, October 26, 2013

It's that time of year again when people begin to plan for their Holiday Season. For some it means planning trips to visit family, for others it might mean planning extravagant meals or decorating their homes. For many it means making gift lists and heading out to the stores. Unfortunately, for too many families, it means facing these special times without loved ones they've lost. It means hanging empty stockings, visiting gravesites, wondering what could've been.

My dear friend, Amy, lost her precious son, Sam two years ago. Amy and her husband, Matt, celebrate Sam's life in so many amazing ways throughout the year. They are two of the most incredible parents I have ever had the privilege to know. Last year, they sent out letters to family and friends asking for help honoring Sam. It was simple really, in the whole scheme of things. Would we consider doing Random Acts of Kindness in his memory? Near Christmas, would we send a letter to Amy and Matt so they could fill Sam's stocking with all of the Random Acts of Kindness that were done during The Season in his memory? I was touched so deeply by this gesture. It changed me not only for those couple of months, but forever, really. This year, before their letter even arrived, I had already begun thinking about all the great things we could do leading up to the Holidays and hoped that maybe we could spread this further. What if even more people were involved? Sam had such a huge impact on those who knew him, and now he's having an impact through those people on so many others. What if he could have an impact on people who didn't have the honor of knowing him?

So friends, I'm humbly asking you to consider joining me in this journey. If you have a little kindness to spare, perhaps for the next two months, you could share it in Sam's memory. It doesn't have to be big, it doesn't have to cost anything. Hold a door for someone, visit someone who is lonely or ill, donate some of your unused clothing or toys, cook a meal for someone who needs one. If you have some spare cash, buy a coffee for the person behind you line or leave some change at the soda machine for someone to find. There are so many things you could do to bring a little happiness and kindness back into the world. Let's stuff Sam's stocking this year. After all, the world could use a little more kindness, don't you agree?

If you'd like to participate, you can reach me via email or PM on Facebook.

Saturday, October 12, 2013

Hello, poor ol’ abandoned blog o’mine. I’ve returned for what could be a brief stint. No more grand promises of keeping up with my writing. I’ve grown smarter than that.

Today, though, I need to write. I have so much swirling around inside me. You see, it was one year ago today that I sent my baby girl into the operating room for her 50th surgery. One year ago today, she had a “temporary” shunt placed. Only one was placed that day because that’s all he could do. She needed three; she’s always needed more than one to survive. She’s a complicated mess in that little head of hers and one just doesn’t do the job. We (and by we, I mean he being kind pretending that I actually had a say in the matter) also opted for a pleural shunt this time which probably wasn’t going to work, at least not for long. This surgery would be the finale to a three month battle during which we came so close to losing our precious girl several times. It came after several ‘sit downs’ with our neurosurgeon discussing the options (or lack thereof) and the after hard question was raised – “How far do you really want to go?” The outlook was often grim and many days were very, very dark during those three months.

October 12, 2012, we had some hope. We had our two favorite surgeons poised and ready to place a ventriculo-pleural shunt that was meant to stay in place for a brief period while her tired and damaged brain took a little more time to heal so that a permanent, multi-shunt system could be devised and placed. In the days following surgery, we hit a few snags, but overall, our little Noodle rallied. Dr. B made it very clear that he was guardedly optimistic that this shunt would give us about a month or so and that we needed to be prepared to walk this road again soon. Over the coming weeks, we were watchful and stayed prepared. No plans were made, the suitcases stayed packed. We planned on spending the Holidays in the hospital.

November came and went, then December and January, February and so on. We dove into therapy and Noodle worked harder than ever to heal. We've explored several alternative treatments as well. It is now one year later and while we have questioned the function of Noodle’s shunt a few times over the year, we have come to trust that beautiful piece of hardware more and more. When she falls ill, I find myself jumping to other things that could be wrong as a first guess and putting shunt malfunction lower down on the list. Perhaps I, too, am finally starting to heal.

This past year has been quite remarkable for our little Noodle. She has never in her life been given such a long opportunity to heal and just “be”. Life for her has always been about pain, illness, surgery and fighting. This past year has been about growth, happiness, laughter, firsts, and just being a little girl. I won’t lie; there have been some tough days and she has had to work very hard; but she has faced it all with such grace and spirit.

We have not seen her neurosurgeon in a year. It has not been an accident or an oversight. It’s not because I’m a bad mom or negligent in her care. It has been a conscious decision, maybe a bit on the superstitious side, maybe a bit irrational, but my decision nonetheless. We are, however, paying Dr. B. a visit in two weeks to check in and celebrate this one year shuntaversary. May he be delighted and amazed by the beautiful young lady he will see before him as she certainly has changed from the sick, lifeless girl he treated a year ago.
Today, I celebrate the life of my daughter. Today, I am filled with gratitude and amazement. Today, I thank her for choosing to fight so hard when I know it would’ve been easier to give up. Today, I thank all of those who believed in her even when things looked hopeless. Today, I pray for another year.

Friday, June 14, 2013

Our first week of hyperbarics went amazingly well. Expect the worst, hope for the best.....that's kind my approach to new and potentially scary things for Noodle. I arm myself with everything I can that has the potential to soothe her and we jump in.

Day one was a little rocky, but overall so much better than I expected. Noodle got fitted for her hood and tolerated getting into it and into the chamber with me. When we started going up to pressure, she got pretty upset. It was challenging to keep her from head-banging & thrashing around a lot, but with lots of singing and squeezes, she calmed once we made it up to pressure and settled in. For the next hour she vacillated between happy/content with a few outbursts of agitation, only becoming very upset again when we depressurized. She was thrilled to have the hood taken off. For me, the experience was fine. I didn't really have any time to think about being trapped in that tiny space with no way to get out in a hurry or all of the things that could potentially go wrong since all of my energy and focus was on keeping Noodle calm and happy. My only real complaint - the heat...my God, the heat - it has to be well over 100 degrees in there! Since Noodle doesn't thermoregulate, it is a bit of a concern, but I know know to strip her down to just a light one-piece dress, no pants and as long as she's calm she's okay. We keep the lights off to help cut down on the heat as well.

Day two was great! Noodle was in a drug induced stupor sleeping when we got there and we managed to get her into her hood and into the chamber without waking her!! She slept the entire time! I may or may not have taken a short nap myself - I'll never tell, but judging by the Albert Einstein hairdo I had when I emerged, it probably happened.

Day three was absolutely incredible. There was a small bit of fussing with the hood, but once we got into the chamber, Noodle just laid back and this amazing sense of peace came over her. Those who know her really well know that she is not the type to just sit and take it all in. She's kind of "on guard" all the time. She's tense and unless she's in a deep sleep, she's always moving, fidgeting, "talking," etc. But Wednesday, she was just lying there and her whole body felt relaxed. Times like that I wish so much she could tell me what she was feeling and thinking. It was as if she knew she was going to feel good and was just waiting for it. When our dive was over, she was mad - really mad! She did NOT want to get out of that chamber! I'm so excited to see what next week brings!

In other news, all four kids visited the dentist this week and we had four perfect reports! How amazing is that?!?! We are so incredibly blessed on the dental front, especially considering that 2 kids had no dental care for their first 5 years, 1 kid had failure to thrive and 1 kid is tube fed. All 4 should have some sort of dental problems, but so far so good.

The big kids are loving their summer programs so far. Spare time is filled with ball playing, water fights, and of course - injuries! Boys - I swear, they'll have developed a complete second skin before they hit adolescence. Noodle is spending most of her spare time at therapy and Esen is also doing extra OT and PT. It's been a wild start to the summer!

Wednesday, June 5, 2013

It seems like I have a ton of laundry with school clothes and play clothes.

I'm over it - school, that is. I've been pretty checked out for a while now. Not the best "school mom" this past month or so. Apparently, that anticipation for summer break never really goes away as you age.

I would love for someone to come and do all my laundry.

Unfortunately, summer isn't going to be a super-relaxing time for everyone. The 'big kids' had big dreams of lounging around at home, playing in their little pool, riding bikes and having camp outs every night. Unfortunately, I, being the big bubble-burster informed them that they would, indeed, be attending Clubhouse and Daycare on the weekdays.

I will likely do laundry.

We are, instead of staying at home to play all day, embarking on an exciting new journey. Next Monday, thanks to the outpouring of love and support of friends, family, & perfect strangers, Noodle begins her Hyperbaric Treatment at Wisconsin Integrative Hyperbaric Center. We are so excited about this opportunity and, as with any new treatment, are approaching it with guarded optimism. Many children have experienced amazing outcomes. Our greatest hope for her is and always has been comfort and happiness. If we can achieve that, we have won! If, by some miracle, this treatment helps her to progress with skills and make gains, well then that is a huge bonus. Along with her hyperbarics, we'll be doing added PT, OT and cranial sacral therapy to try and get the maximum benefits. It will be pretty intense few months.

Esen will also amp up PT and OT this summer and all of the kids will have various medical appointments to get out of the way.

July will bring three weeks of Summer School for all four kids and the first time riding the school bus for Noodle! Another very exciting milestone.

More school clothing - more laundry.

Kevin and I are trying to carve out some time here and there to work on some home projects.

We do laundry - a lot of laundry.

Weekends are low-key and we try to let the kids just be free to do whatever they wish. Lots of fort-building, water fights, 'camping,' and general silliness.

Wednesday, April 24, 2013

Six years ago, our lives were forever changed. Of course, the addition of your first child always changes your life in the typical "holy crap, we've a kid now" kind of ways, but six years ago today, for me anyway, I had my single most life-altering experience. Six years ago today, I walked into an orphanage. I needed that. I needed that reality. I not only needed my son; my too small, too sick, too scared, painfully damaged son; I needed life to teach me that I was selfish and closed off; that I was on the wrong path. I needed my eyes opened to the larger world around me. I credit one, little person for changing my life for the better and that's Esen.

Who knew I would learn so much from this one, little person. Who knew that as the days passed and the healing slowly began (and still continues) that our hearts would open and change in such big ways.

Esen, you are the greatest gift the world could've ever given us. You make me smile and laugh every day. You always keep me guessing and definitely keep me on my toes! You have taught me patience, gratitude, humility, forgiveness and courage. You are a living testament to the resilience of the human spirit.

Thank you, my little monkey, for allowing us to be your Mom & Dad - it is an honor, a privilege and I am truly grateful every second of every day. I love you more than you can ever know!

Friday, March 22, 2013

Thirty-One for Noodle

Marissa (aka "Noodle") was born at 25 weeks old on July 20, 2009.She has endured more in her short life than anyone should ever have to endure.Too many times, we were told that she wouldn't survive. Twice I've stood by and watched as a team of doctors and nurses fought to bring her back to life. Too many times, we were told to prepare for the worst.Too many times, we were asked how "far" we wanted to go. We have always opted to fight because SHE has always opted to fight.

Noodle struggles with very complicated diagnoses including:Hydrocephalus, cerebral palsy, epilepsy, bronchopulmonary dysplasia, hemiplegia and cortical blindness to name a few.She has endured 50 surgeries and has spent around 300 days in the hospital so far.There is no cure for any of her conditions.She works so hard every day to overcome the obstacles placed before her and she is living proof that miracles do exist.She has been an inspiration to all who have met her and she brings a smile to the face of every person who is lucky enough to cross her path.

We have been given the opportunity through a generous grant to try an innovative treatment for Noodle that could not only relieve some of her pain and discomfort, but that also just might help give her some freedom by restoring some of the function she has lost.The grant we received covers two-thirds of the total cost of treatment, but we need to fund the remaining one-third by raising an additional $2,000.We owe it to our little fighter to give her this chance.

Thank you for considering supporting Noodle by participating in this fundraiser and by sharing it far and wide with friends, family, co-workers and anyone else you can think of.Together, I know we can do this!

About Me

I am a happy wife and lucky mom to four very special kids. If there's one thing I've learned over the past few years it's that life never goes as planned - and that's okay by me! feel free to email us: ksfenske@gmail.com

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For six long years we've held her tightly in our hearts. Leaving her behind in her orphanage was the hardest thing we ever had to do. We've fought like hell to be allowed to bring her home & promised her that we'd never give up.

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Some luck lies in not getting what you thought you wanted but getting what you have which once you have got it you may be smart enought to see it is what you would have wanted had you known..... ~Garrison Keillor